After a long search ICS has hired an expert in caring for people with Alzheimer’s and other forms of dementia. Nettie Harper will lead and shape services for the many ICS members with memory loss, and guide us in supporting the caregivers who love them.

Nettie didn’t plan to work with people with dementia. Starting out in college her plan was to go to law school. That all changed when she began volunteering at an adult day program and fell in love with the experience.

“I decided I wanted a different career path, so I talked to the recreation therapist at the adult day program about what that would entail. Based on that conversation, I decided to go to the University of Florida for a Master’s degree in recreational therapy.”

To pay for graduate school, Nettie needed a job, and the program where she’d volunteered offered her one. “They had me go into clients’ homes and work with an aide who was 66 years old and had a lot of experience. She showed me the ropes.

“I cleaned, changed briefs, gave bed baths and did all sorts of other hands-on care. The aide would work with me for two hours at each visit and then when she left I would stay another two hours and do programming with the client. I did that through grad school, as well as working at a five star pizza joint answering phones and delivering pizzas to pay my tuition. So I did a lot of home care. That’s where I got my start.”

Since then, Nettie has had an impressive career working with people with memory impairment, first in Florida and, for the past 15 years, in New York. With her knowledge and background in recreation and programming, her work has included designing and directing Alzheimer’s care units in residences, as well as research and training. “I’ve been really happy doing this work,” she says.

One achievement Nettie is especially proud of is a curriculum she helped create for training nursing home staff working with patients with dementia, which has been used in hundreds of homes.

“It’s a three-day training that gives staff working with memory loss patients a lot of information about the root causes,” she says. “Then we focus on different avenues of communication, verbal and nonverbal, and different behaviors people with memory loss may have and what they mean.

“A lot of the behaviors we see are just signs of an unmet need. For example, when a patient keeps trying to get up, if you just try to stop them, you aren’t going to accomplish anything. Usually, when someone keeps trying to get up it’s because they need a bathroom, or maybe they are feeling uncomfortable and need to take a walk. We also talk a lot in the training about how the staff see themselves as individuals, which helps them see their patients as individuals too.

“We did some research following the effects of the training and what we found was very encouraging. When staff went through the training, patient falls decreased, the use of restraints decreased, and so did the use of psychotropic medication, which was pretty phenomenal. Also, the mood and the environment changed in those nursing homes, which increased staff satisfaction. All of these outcomes were documented and presented at a conference for the Alzheimer’s Association.”

A different perspective

So often what we think and hear about caring for people with memory loss is how difficult and stressful it is, how sad and depressing.

“I don’t see it as sad,” Nettie says. “Are there sad moments? Yes. But what I am able to do and have been able to share at ICS on visits with the nurses is to look at the members’ strengths. I think too many of us look only at what’s been lost. Of course there is loss, and I don’t want to minimize the serious loss taking place for these members and their families, but there are still strengths and there are still new connections that can be made.

“For example I went out on a visit with a nurse the other day and the member’s home care aide kept saying to me about the member, ‘She can’t do anything; I have to do everything for her, and she throws the food at me.’”

“I asked the aide for a bowl of ice cream and used it to show her a simple technique where you place your hand under the patient’s hand while they are eating. This allows you to grab the spoon but if the member doesn’t want it coming to her mouth, she has control to bring your hand down.

“What you are doing here is taking advantage of the person’s muscle memory. So I sat there and said, each time, ‘Would you like some ice cream?’ And this woman, who could not verbally answer me, was able to move her mouth and shake her head, and so I knew it was okay. At one point she didn’t answer and I said to the aide, ‘Watch.’

“Then I started to bring the spoon up and the patient brought my hand down. She had control.

“This particular person had lost a bit of her eyesight, lost a bit of her hearing. But we made a connection just by touching hands. A lot of sensitivity is in the palm of your hand.

“So here, I didn’t see sadness. I saw a moment where I could educate the aide so she could have that connection with the person she is caring for. And as I was leaving she was calling the woman’s daughter and excitedly sharing what she had learned. The aide was absolutely receptive and now the daughter will be able to see how she can make that connection with her mother too. And that’s a wonderful outcome.”

Indeed.

Needless to say, we are very excited to have Nettie on board to lead ICS services for members with Alzheimer’s and other forms of dementia, and look forward to bringing you news as the program develops. Meanwhile, we invite readers to join Nettie and the ICS team for the 27th Annual Alzheimer’s Walk, New York City’s largest event to raise awareness and funds for Alzheimer’s care and support.

Our team will walk in Manhattan on Sunday, October 16. You can register for the ICS walk team, donate, or get general information about the walk here.